i have bee suffering chronic pains for 12 years now without proper diagnosis, can someone help out

Bones, joints and muscles
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Pains started in 2002 in my right thigh, which were on and off. I was tested positive to Rheumatoid Factor (RF). I later again tested negative to Rheumatoid waler Rose and Rheumatoid Latex in a referral hospital.  The Doctor then dismissed the first diagnosis and said I dont have RF.  However, I was placed on anti-Inflammatory drugs and got some relief although symptoms continued on and off.

 In 2006, while struggling with the symptoms i nmy legs; i got a severe episode of vertigo for three days and was hospitalized. CT scan showed a temporal hypo density in the right lope of the brain. Control test showed the same in 2009, and a neurologist said i am OK with no problem in the brain. From start of that episode in 2006 to 2010, I was place on so many anti-depressant and antihistamine such as elavil, fluxitine, paroxitine etc and even benzos. This is because I continues to have episodes of lighthead-ache and tension type head-ache. Other laboratory tests were performed and all came out normal. These include: EEG, ECG, ECO-cardiogram, Holter Monitor (BP), Toxoplasmosis and all veneral diseases. In 2011, I was doing better after the neurologist placed on elavil(in liquid form).

Early in 2012, my low back started hurting (pains) during rest at night and easing by day but gradually it became serious and I had pain in the hip, thigh and neck which at times disables me from performing daily activities.

 I have the HLA B27 gene but ESR, CRP and full blood count were all normal indicating that there was no inflammation. X-ray of the spine did not show any scaring and the doctor denied any possibilities of me having spondylitis and again I belong to Fulani race in Africa with majority having the HLA B27 gene. He again ordered me to run liver and kidney function tests in the referral hospital here in Yaoundé, which are CREAT, UREA, SGPT, SGT, PAL, SGOT. All the results came out normal. The only medical test that I did go for is tumour and the Doctor keep on refusing me to do this saying that it is no possibility.

 Ankylossing Spondylisis, is more of a hereditary disease but we have never seen that in our family. The only disease, once experienced in the family is diabetes, which my junior brother died of at age 20.

 Is there anyone out there who can advice me on what to do. Presently I am active in my job but at times, I suffer pains that I don’t want to work.

 

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Hi Said

I have AS - and have studied long and hard regarding my condition and the various pathways to autoimmunity.  I'm 48 now but have had AS since my teens.

The thing that made me want to reply to you was the not the AS symptoms but the brain issue - just wondered if you had heard of gluten ataxia and celiac disease.

Diet plays a big role in keeping my own symptoms down and I have been gluten and corn and barley free for over 20 years.  I am well read regarding celiac - and there are  many articles raising the issue of anti-gliadin antibodies in other autoimmune diseases - and also concerns about a protein in wheat called TTG that is implicated in certain brain condition - starting with Gluten Ataxia, which impacts the part of the brain that you have discussed.

Sounds like you are getting lots of good tests - so perhaps consider requesting an anti-ttg antibody test for celiac or elevated anti-gliadin antibodies for Non-celiac gluten  sensitivity.

Hope you get some answers soon! confused

 

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....sorry Said just one more thing - as well as headache caused by tight neck muscles from AS - I used to get occasional debilitating migraine headaches these also have 75% reduced in the last 15 years since my diet changes. I used to get a horrible floaty brain fog, extreme tiredness.

There's a medical article published on the internet called 

"The significance of coeliac disease antibodies in patients with ankylosing spondylitis"

This article goes on to discuss intestinal permeabilty caused by a protein in wheat called gliadin and passing of micro-organisms and other proteins from gut to blood.

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Dear Gently,

Thanks so much for your response and explaination. The confusion with me here is that Dr, did not conclude though with all the symptoms that i am suffering from AS, some will say Fibromyalgia and others with say neuroparthy. With all the symptoms i listed I have never suffered headache. and for the Coeliac disease antibodies, anit-gliadin and the gluten Ataxia, the truth is that it is my first time hearing of that and may be here in Cameroon, doctors dont yet know that even due to our poor medical system. Even the HLA B27, the blood sample was sent to france for the test.

Thanks so much, i am now learning alot and will have to follow up diet like you mentioned. I hope all of us get better from this soon.